The Worst Rumor… and Why I Talk about It

Her hands were on her hips and she looked ready to accuse me of some awful misdeed.

“I  heard the worst rumor about you, but it looks like it can’t be possibly be true.” Ah. I was pretty sure I knew what she meant. I didn’t know her well but we’d interacted off and on at work for more than a decade so I had some sense of her views and understandings. We had a good working relationship. We were very different people though. In her smart flats and conservative slacks with a light weight gray sweater topped with her sensible bob-cut, she stood in sharp contrast to my bright red blouse, poppy-sprinkled skirt, five inch t-strap heals and newly died hair with three colors chunked for dramatic effect.

“Oh! Do you mean that you heard I have MS?” She blinked.

“So it’s true? But you look great.” I smiled. Of course what she meant was that I was incredibly mobile and mentally sharp. And, thank goodness. I wake up amazed myself on a regular basis. I also go to be most nights with more than a hint of fear: is that twinge going to get worse? Is my vision blurry from fatigue or is it changing? Does that bit of tingling in my shoulder mean I’m going to lose feeling again? What’s wrong with my foot–I am getting drop foot? Then, most nights, I take a deep cleansing breath, meditate, and remind myself that there are some things I control, some things I can influence, and some things I must simply accept. So I go to sleep and tell myself that I will re-assess in the morning.

I wake each morning with gratitude that I have all my senses and can do my exercises and can live another day alert. And I remind myself that I will do this, appreciate each day, for as long as I can do so consciously. I am one of the lucky ones after all.

So I do not shy away from telling people of my condition, my disease, this mysterious thing called MS. Telling them reminds me I am fortunate. I also believe it lets them realize their own blessings. Maybe more important, it draws attention to this little understood disease and demystifies it a bit. My strength and skills can be a reminder that 1) everyone you meet is dealing with things you might never know or understand so we must be thoughtful toward one another, 2) we should never underestimate the power and strength that come from a life with purpose–I still have a lot to do that really matters and I will do my best to do it regardless of my disease, and 3) talking helps.

___________________________________________________

I was in first grade when I realized something remarkable.

“Isn’t it neat that you don’t feel sick when you’re talking and playing?” I said (well, some paraphrase of that I’m sure) to my little sister, Leah, as we kneeled at our toybox.

“What?” she asked.

“I don’t hurt when I talk. I can’t feel my cold.” I explained to her in terms I was confident a four year old could understand, watering down what was certainly very advanced first grader language.

“That is neat.” she said and then went back to dressing her teddy bear. But I was validated nonetheless. I felt I had discovered something amazing.

I have always been incredibly verbal, even verbose. I love to talk and to sing and to write. And it heals me. Even those who don’t have such linguistic drive have probably experienced some variation of this though.

My husband is a proud introvert but, as a day of teaching his fifth graders goes by his own cold and flu symptoms have waned each day this week. “You get too busy to feel sick; you’re distracted from the pain.” Ah, there it is–that magic our brains can perform to help us through our struggles.

I find it empowering to talk about my challenges and overcoming them. I also find it gratifying that, as I talk and engage with others I feel better. This is one of those rare blessings that I acknowledge as an actual gift from the universe. I am not spiritual but I definitely feel fortunate, even blessed.

___________________________________________

“Well, I just can’t believe it,” she continued. “How do you feel?” She always had a tone of disdain. She was not a happy woman. My smile always seemed to disturb her. In ten years, I’d actually never seen her smile. She was serious and dedicated to her work but she shied away from warmth.

“I feel great. I don’t have any numbness right now and I have good energy this week. I just keep moving forward like everyone else” I assured her. And I smiled.

“Wow. You’re amazing.”

“No” I laughed. “I just have a lot to do and I’m determined to do it to the best of my abilities.”

I turned away to return to my preparations for the meeting I’d be facilitating in just a few moments. She turned, as if to walk away, then paused. She returned her glance to me, looking very serious.

“Aren’t you afraid for people to find out and judge you?”

“People always judge us; I’m used to that as a strong working woman, aren’t you?” I laughed. I am sort-of known for my boisterous laugh and I know, in fact, it’s one of the things she finds off-putting about me. I draw too much attention to myself for her tastes.

She appeared to soften at my statement though. I realized she probably knew far too well what it felt like to be judged. I had judged her for her lack of warmth, in fact. I should be more thoughtful, I reminded myself.

“I have to talk about it. It’s real. It’s part of who I am and it’s not going away. Talking about it helps me come to terms with it a little more each conversation–and that makes me stronger.”

“Like I said, you’re amazing.” She turned and walked away. I couldn’t quite read her expression which was okay. I am sure she and I both had some reflecting to do. Frankly, I was impressed that she reached out. It was brave to even ask about something as taboo in the U.S. as disease–especially without a level of intimacy established in the relationship.

Maybe that’s progress. Maybe, as a society, we are dismantling the stigmas associated with illness. Maybe she and I were making progress in our own relationship.

I checked the clock and stood to open the meeting. And as I talked, I felt less fear. I felt no pain.

Oh! And the meeting was great. I was amazing.

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Photo: Annual Northern Utah Walk MS 2015

Keep Moving Forward

The play was powerful. Audience members were choking back tears, sobbing, inhaling,then gasping for breath when their lungs noticed they’d not been released after moments of tension.

We sat in the back of the theater, grasping each other’s hands in an effort to find strength. Would this be our life?

Would my husband become the lonely care provider for my failing body and mind? Maybe, I thought. But that changes nothing–except the daily reminder my condition brings that I must be grateful. I must be strong. I must live and love every moment.

I don’t know what tomorrow holds. None of us do. I joke sometimes that, if there’s any kind of afterlife or supreme being, well then, I have some suggestions when I get to “the other side.” But other times I think, maybe not knowing is better. The mystery reminds us to cherish The Now. It reminds us that not only can we not control everything but that’s okay. The world is not on our shoulders. The world, instead, is our gift.

So, through tears and very natural fears, I left the theater, not at peace, but at acceptance. Will I still fight illness? Absolutely. Will I still worry about the likely period in my life when others need to take care of me? Inevitably. … and that’s not that different than anyone else. No one knows. No one controls. The lucky, though, we live–really live—each day.

I take a deep breath as we get in the car to head home and spend another night together, blessed in our marriage, and I remind myself as I instinctively check the time on my phone: “Don’t watch the clock; do what it does. Keep going.”*

*quote from Sam Levenson

Someone Like Me… and You

IMG_3358 “What’s someone like me doing in a life like this?” is playing on my phone as I begin my evening rituals, stripping layer after layer of color and product from face and hair. First the mascara and eyeliner, then the shadow, the face powders, the fixatives holding my hair in place, … Cyndi Lauper’s little known lyrics strike a chord. This song has resonated with me since I moved to Utah more than twenty years ago now. Tonight, though, is one of those nights when thoughts flow more like a waterfall then a gentle stream.

*

“Why are you moving to Utah?” was the question everyone asked when this liberal activist from Portland, Oregon said she was leaving. Bets were placed about how long she’d last in the conservative Wasatch Front. That was 1991.

“What brought you to Utah?” is still a question she struggles to answer.

“How much do you want to know?” She giggles in reply. Sometimes life just needs a reset button. That’s what Utah was, a completely new start.

*

Tea in hand, makeup removed and  hair at ease, I sit to enjoy the quiet time after everyone else has gone to bed. Sipping on the peppermint and breathing deep, I am struck by the fact that my quip shared with multiple do-gooders at tonight’s fundraiser is no longer necessary.

I’ve lived more than 20 years feeling I do not belong and am so different from my peers. When I received my last promotion I actually worried I would not be included in key decisions–wouldn’t be part of some “cool kids” vision I had created of my organizational hierarchy.

“Should I start getting my nails done, maybe get facials? What about my clothes… will they be okay?” My sweet husband just listened and offered “Do what makes you feel good.” Not very helpful advice, or so I thought at the time, but apt nonetheless.

*

“Look, Sarah, I even wore heals tonight!” my boss laughed as we walked into the event.

Wait a minute! Was my gorgeous, experienced, always financially stable supervisor actually self-conscious about her appearance and how she might be perceived by others? I thought about this all night.

It’s true I dress differently than any other in my position. My liberal streak shows in my flowing scarves and sari skirts. My commanding presence is made known with each assertive stride in my funky heals. And my hair is a different set of colors every six weeks.

It’s also true that I was raised and lived, and still live, quite differently than my peers. The abuse and addiction in my home shaped me and sculpted my strong spirit. The broken souls welcomed into my home as a child taught me gratitude–and how to learn from everyone I meet. I was no “cool kid” with my movement from school to school, protected only by the strong characters in my books.

Now look at me. What’s someone like me doing in a life like this? How dare I spend the last several months feeling somehow less-than when I have come so far and found a way to do so much. And, worse, how dare I assume others do not have their own insecurities and, instead, only judge and hold themselves above others. I was the one who was judging.

How can someone like me be so judgmental? How could I just assume this group would not accept me?

*

I always told my students “don’t ever let anyone else be right about who you will become; prove to them that you are only who you choose to be–and surpass all expectations!” I like to think I’ve done this. But sometimes, even someone like me, wallows in her little girl fears and insecurities. Tonight reminded me that maybe we all do this on occasion.

So, what’s someone like me, and someone like you, going to do? How can we remember our own greatness and embrace our own ability to connect and empathize with others?  In a life like this, it would do us all some good to remember that we all have our challenges and our worries, but we’re all in this together.

Hope

Her mom was the strongest woman, no, the strongest person I’ve ever known. And the two were inseparable. She wanted nothing more than to “grow up” and be  just like her mom.

Our lives are fragile though. She sat just outside her cell, telling me her story. The English teacher in me could not help but think this young girl belonged in a college prep class, not in the most secure youth incarceration facility in the state. Her vocabulary was impressive. Her phrasing, almost poetic. That elusive quality, “voice,” all writers work to hone, came naturally to her. Her story flowed easily, pouring from her in the only release she ever allowed herself. She would not cry. She would not falter. But she would tell her story.

“I just don’t want any other girl to go through what I’ve gone through,” she explained.

She could not know that I felt a kinship with her, a connection between our stories. But I survived relatively unscathed from my experiences. Despite the love of her mother and faith in her god, a middle class upbringing, and scholarship eligibility–she had faired far worse than I had.

How strange, I thought. All I had was my own mother’s love, and my own determination. Of course, I never turned to drugs.  Of course,I lived in a different state, a different time–before zero tolerance, even before meth.

So, before me was a beautiful, petite blonde from a kind of privilege many only dream of. And her world had crashed in around her.

“My mom thought it was just self-medicating,” she choked down a bitter laugh. “But that wasn’t it at all. I’d been using everything from caffeine pills to diet pills to keep my grades up for years. Those just didn’t cut it anymore–sometime around freshmen year, I guess. I started mixing drugs and texting the kids who reportedly dealt so I could supplement my uppers.”

She looked down at her warped nails on her dainty hands. No polish was allowed “inside.” She hadn’t earned that right yet. She had only arrived a month ago and had done little to endear herself to the other girls, let alone the staff.

“It turned out meth was just what I was looking for. And you have no idea, none, how amazing it feels when you’re on it, so don’t judge. I miss that feeling more than anything–except my mom.”

“So what happened?”

“He moved in and my whole world changed. At first he was good to us, like when they were dating. But soon, I couldn’t sleep with all the yelling, cursing, and all the crap he’d throw around downstairs while I tried to study or sleep.” She took a deep breath, almost a sigh. “So, I looked for something to help me sleep. I tried everything. I did everything. I guess I was already an addict, but that was the “tipping point,” my therapist says. … I don’t regret it though, because, by the time he came for me, I knew how to numb myself. That was self-medicating.”

“How did that affect school?” I asked. She had been in my first grade class years before. I was her principal now and knew I had to meet with her when I saw her name on the intake list. She had been all smiles and potential at six. At sixteen, after years of addiction, abuse, and living on the streets, she weighed about what she had when we last saw each other and she looked barely alive, even after nearly a month clean.

“I started missing first period. Then, my grades tanked in everything but English…. I was sent to DT twice for showing up high and flipping out on my teacher–and the SRO. DT wasn’t bad, but there was no catching up after missing so much school So, I stopped going. I also stopped going home. I wasn’t safe with him and my mom knew it. She just didn’t know how to get out–until she saw me here, that is. That seemed to do the trick. Hah!” She let out a forced laugh, a terrifying sound really. “See how helpful I am?”

“Anyway, one thing led to another. You can’t assault an officer more than once or be hauled out of a drug house, without making a name for yourself with the courts. My judge ran out of options, she said, since I kept running from any semi-secure placement. So, here I am.”

“… And you said you don’t want anyone else to have to go through this. What do you mean?”

“I mean, I’m sure someone knew I was using before I started getting in trouble. I’m sure someone, like a counselor or one of those school social workers, could have recommended treatment for me–or better yet, asked if I felt safe at home. You know, the first time I failed a class, I got detention at school instead of a talk with my counselor. I don’t get that. I also can’t understand why no one noticed him, what an overbearing creep he was or how he looked at us–or how I changed after he started using me to satisfy his sick needs.” She paused.

I knew only too well this part of her story. And the truth is I had been there myself. No one noticed in my case either. No one wanted to see the damage done to the brilliant beautiful little girl with so much potential. They wanted only a success story.

Then she looked at me with those eyes that always smiled up at me with such hope and such joy when she was younger. The blue in her eyes had faded considerably. The look was fleeting and quickly clouded over with disappointment. In that moment, I knew she felt betrayed.

“You said we’d always have someone looking out for us at school, Mrs. R. And we have all those people, so many people,  but I ended up here. And I’m not the only one. Do you know that some of the kids were recommended placement here by their principals? I thought they wanted us in school, learning.”

“Well, you’ll finish your diploma here. I’ll even help you start college. We have concurrent enrollment now, you know.”

“That’s great. Now I can be separated from everyone and no one needs to feel guilty.” Those words gave me something to think about.

I’m still thinking, three years later. She did graduate, early, and started university course work. She and her mom are moving to the southern end of the state as soon as she gets out–so they can start fresh. They will both go the university. It is a success story, I suppose. But I still feel guilty. We let her down as a system, and she’s not the only one.

I am working on my doctorate and studying juvenile justice issues. I get discouraged often. But I remember that look she gave me–the one from her childhood, the one I saw before she admitted she felt betrayed (though not in so many words), and the one she had on her face when she looked up at before before giving her speech at graduation. I remember her hope.

And I feel hope. Maybe, in sharing her story and the story of others like her, of others fighting for and supporting all the youth like her, maybe we can make a change. I hope.

I Walk

We took our couple’s selfie, and dutifully posted to Facebook to share this moment with the family and friends who couldn’t be with us. Then we headed out into the sunshine and breeze. Spring in the canyon is always picturesque and this morning was no exception. Nestled in the botanical gardens, we approached the booths and displays and a sea of orange. Families laughed and gathered in close, connected circles, probably to ward off the wind as it picked up. Kids ran and spilled their hot chocolate while mothers and fathers laughed and played at calling them to order before the event.

Ribbons were tied and songs were played. The gardens glistened with a bit of morning dew and Ogden Canyon came alive with color and sound that grew increasingly joyous as the hour wore on.

We made our way to the table to sign in. I led the way as usual. Let’s get this over with, I thought.

“Here’s your walking kit, your water bottle, and your number, dear. You write the name of your team and the person you’re walking for right here.” I hadn’t known we would need to do that. “Oh,” I paused, “well, it’s me.” I could be mistaken but I swear he did a double take then swallowed his surprise and said, then you’re one of the guests of honor! You come over here and get this number and the ‘I Walk With MS’ badge.” Oh, dear lord, I was going to have to wear a sign, like a scarlet letter, that says, ‘look at me; I’m damaged.’ Super. At least it was green, I consoled myself, and my favorite bright, vibrant, lime chartreuse at that.

I turned with our materials and grabbed Ruston’s hand. He led me to a quiet area to write our names and pin our numbers. We had to list the year of my diagnosis and my name on both numbers so all the participants would see that it was people like me they were helping with their donated time and money and the labors of their energetic, sculpted physiques.

Professional and recreational runners stretched as the rest of us—yes, I am one of them now—concentrated on our posture and holding our heads high as we made silent vows not to cry.

“I can’t just stand and wait,” I said.
“Well, let’s take a walk then,” Ruston smiled. Thank god he didn’t have that overly perky lilt he adopts when he’s uncomfortable. How strange, I thought, that he was so comfortable and strong.  How strange and how fortunate. So we walked. And it was perfect.

Celtic folk songs played and soothed my spirit as I held Ruston’s hand and we meandered the paths. I thought of all I had to be thankful for. ‘I am thankful for my strength, for my support system, for my life’s work in equity. I am an advocate, I am an activist. I can be an activist for myself now. I am an MS Activist.’

My thoughts were interrupted as the music concluded and a speaker’s mic’d up voice carried above the crowd and called us to order. Ruston and I joined the crowd slowly and listened to the successes and struggles of the amazing, brave souls who had fought all year for MS and loved ones to be recognized, supported, and healed. Laughter and tears mingled as we all held our loved ones and prepared for the journey ahead.

And with a cheer, we all set out on that path together, walking and jogging and running, even in wheel chairs and strollers. Ruston gave me a kiss and the tears flowed, but I smiled. And I walked. I walk with MS.

A year later, I prepared to select our team and to garner donations. I am still walking and will walk for as long as I can, just like we all do. I am looking for likeminded spirits to join me. Walk for MS in your community this year. For more information to go the National MS Society and Walk MS. 

Look Up

She was walking alone. The silky black hair falling forward would have hid her small round face were it not bouncing and swaying in the slight spring breeze. She was beautiful, but not in the way that would be idolized in her high school yearbook. She had a grace she appeared to not even know existed. Her eyes downcast, her face down, I worried she would not even see a car coming as she crossed the street. My soul cried out to her soul, “look up, sweet girl, there is so much to see and do, both for beauty and for your very survival; look up.” I’m sure I imagined it, but her chin did seem to tip up and the sun caught her soft features and her bronze skin glowed.

I caught my breath as I was transported back in time to see the other side of the image, the yin to her yang.

*     *     *

A slight young blonde took purposeful strides as she rushed home. She had to walk fast since she chose not to deal with the drama of the bus ride but had to be home in time to greet her sisters when they got home from school. She had to let them in and make sure they did their homework before she settled in to do her own hours of studying.

Her head was down as she walked. She refused to make eye contact walking through the city, it wasn’t safe to draw attention to oneself, she thought. The Portland sky was mostly grey but bits of what she called “godlight” poked through from time to time to keep her going as she peered through the long bangs and swishing hair in her face. A shock of sunlight caught the edge of her hair as she stepped forward. “Wow, my hair has gold highlights, fiery gold.” She was surprised to realize she thought it was pretty. She wondered if she was pretty. She lifted her chin and bobbed her head up and down subtly in a few different directions to admire the sparkling highlights from different vantage points as she walked, still careful not to move too much or draw attention to herself.

When she made it home, she had a few minutes to herself before her youngest sister arrived. So she stood before the bathroom mirror, in natural light then electric. “My hair is pretty,…” she didn’t know what to do with that thought and it didn’t change anything, she knew. She was still the same quiet, smart, shy little girl no one at school even wanted to know. She knew she had talents and skills and dreamed often of showing these, but never did. Finding something pretty about herself did not change that. She would keep to herself, it was safer that way. And she had too many responsibilities to spend time with anything but schoolwork and family duties. More important than talent was dependability. She was and always would be dependable; let her sisters get the attention, grow their talents, receive acclaim. That was the way it should be.

She turned off the light above the mirror and went to prepare the afternoon snacks. No more time for self-indulgence.

*      *     *

The light changed from red to green. The girl had crossed the street and it was safe to turn and continue the drive home. “I wish she knew how beautiful she was; I wonder if she’ll ever know, ever learn, like I have, to finally love herself.”

How do we teach our girls to love themselves? How did I learn? How did I go from lonely dreamer to beloved leader and empowered activist? I don’t know if it was just time and maturation. I love who I am though, and I love my life. I still retreat to that shy quiet girl from time to time, like when I received a life-altering diagnosis last year or when I hear a song from my childhood and remember…

Maybe this is why I went into education, for all the little girls who needed someone to tell them, you are beautiful, you are powerful, you are a gift to this world. Look up, sweet girls, there is so much to see and do.

Lessons from Mama

My mom, Mama to my sisters and I, gave me two important lessons:

  1. Always leave a place better than you found it.
  2. No mortal has ever been nor has ever needed to be perfect.

Words cannot describe how much I needed these lessons. The first lesson was easy for me. It made me a super-star babysitter, an amazing house guest, and, ultimately, an activist.

I have always been feisty and at least outwardly tough.  I was old for my age, with an imaginary husband and angel instead of a mere friend. I loved soap operas and decided at age four that I needed a pair of heals (blue plastic clogs did the trick), long hair (I wore a purse with braided straps on my head), and starting preparing to be one of those “wonder women” I heard about on tv. I was going to do it all, be it all, and take the world by storm and set everything right. I was  a perfectionist with a strong desire to make the world better–my version of better.

My dollhouse was a place to clean and organize. Public restrooms needed my attention and I would often have to be dragged away to be stopped from doing more than wiping down the counters. It was important to me the angle at which the tv guide sat on our table and how our kitchen was arranged. I was six when I first told a teacher, “I’m going to do it like this instead because I think that’ll be better.” I got away with things like this because I have my mom’s frame and. let’s face it, a tiny girl with oversized glasses and just enough freckles on her nose is just too adorable to say no to. And I told people that.

Every once in a while, though, there would be those who were not willing to let me “improve” things. When ever I encountered someone who questioned me, or worse, someone who observed me make a mistake, I found myself at a loss, almost debilitated by panic. I was riddled with anxiety as a child, never sleeping through the night, always crying and worrying.

A library book left on the bus? I did not sleep the entire weekend until my mom contacted the bus company and it was retrieved. My mom and stepdad had a fight? I would cry all night as I planned how we would survive without a second income, where we would live, and how I would help out. My mom had to work late? I had to stay awake until she got home so I knew she was safe.

If I saw a movie with a fire, I needed to make a fire escape plan. If I heard on the news about political conflict, I would pray, for hours, that our leaders would be smart enough to do what I thought was right.

This isn’t all bad. My perfectionism and anxiety led me to create my first chore chart at a very early age, to help my family be organized and make things fair. I was a teachers’ favorite. I always sought work and responsibility. I definitely was working on Mama’s first lesson.

That second lesson, though, that was a killer.

“Sarah,” she would remind. “Only our Heavenly Father is perfect.” I would smile and fight the urge to roll my eyes. “And Jesus was only person to ever walk the earth who was perfect–and even he was tempted.” I never told her that didn’t sound like perfection to me. I was pretty sure I was above temptation.

My ego helped me through a lot of difficult times but obviously got in the way more often than not when coupled with my perfectionist streak. Pride resulted in migraines and health problems and eliminating all remnants of a social life by the time I was a teenager. I had other things to attend to than the frivolity of the young, I thought.

So, how did I finally learn that I cannot nor should not aspire to perfection–but can still make a positive impact on the world? I don’t really know. I do know that Mama’s words echo in my mind during every yoga practice, every professional conflict, and every quiet moment of self-doubt.

I also know that this is the one area that I feel like my MS has helped me to improve. My diagnosis felt like I was branded: MS, flawed. I had to accept that I cannot change my condition. I can strive to be a success story though. Mama reminded me of that when she visited for first formal MS visit to the neurologist.

This lesson and this trial with MS has helped me to create a much more balanced outlook on life, and on myself. I know I am doing the best I can–and I will always do the best I can at everything. But I won’t be perfect. MS reminds me of this daily. I cannot even pretend to be perfect. I take a handful of pills each day. I experience pins and needles all the time. I know the names of all the MRI techs in the area. …Yep. This mind and body are far from perfect. I accept that. And I don’t need to be perfect to make the world a better place. I do it every day. IMG_0024